A Week in the Life of a Caregiver: Monday
My Head Is Racing with All I Have to Do
I start off another week and have to fight off the dread I feel when I come downstairs to start another day. The moment I open my eyes in the morning, my head is racing with all the things I have to do today even before my feet hit the floor.
Sal has today off and, since Charlie hasn't found a summer job yet and Christina has off from summer day camp today and tomorrow, everyone is at home and I took advantage and slept a little later than usual. I've learned not to feel guilty about sleeping late because I deserve a slight change in schedule sometimes.
As I came down the stairs, I said a little prayer. Then I prepared the kitchen table with all the things my mother would need for breakfast. I heated the water for our tea and her oatmeal; diced prunes for the oatmeal; set out her medicines, petit beurre cookies and milk for her tea, and brought her bridge and two glasses of water to the table. I've learned everything has to be set up the exact same way every day so as not to upset my mother's routine. I now know that when a person has dementia, routine is very comforting.
Sal is up and wants to talk to me alone. I find myself splitting my time in many directions and, since I usually don't get the chance to be with Sal in the mornings, I'm taking full advantage of it right now. Sal works very hard Monday through Friday, waking up at 5:30 a.m., and he doesn't return home until 8 every night. His days become extra long with a three-hour round trip to and from New York City.
Here I am back again at the end of the day. Mom was past the point of obnoxious today, repeating herself at the drop of a hat and yelling at me whenever she became frustrated and nervous. Ever since Mom came back from the rehab facility [after she broke her hip], Sal, Charlie and I have taken turns taking care of her whenever one or the other of us has had to go out. This is taking a tremendous toll on all of us because we have no family life together anymore. During most of the day she sits in her recliner and drifts from one nap to another. Sometimes I look at her and do not recognize her at all.
Mom was such a vibrant person, always taking care of others and putting herself last. Since we have no remaining relatives in this country [Elvira Sgusgu is from Argentina], I have had to tackle all of her care myself. I don't mind caring for her because I feel it is a way to give back to her for all the years of love and caring she gave me. I consider what I do for her so little in comparison to the greatest gift she gave me, which is life.
During the past two years, her health has been declining, and what I miss most are the many conversations we used to have. Mom could talk Chatty Cathy under the table! She was always very alert and interested in current affairs. Now all she does is repeat what day and time it is, as if to show me she still can think. On occasion, I will tell her something, and it seems as if the words are sinking in, but the lack of expression on her face shows me she really doesn't comprehend what I am saying.
Last Saturday I took a chance and took her upstairs to take a bath and shampoo. Getting up the stairs wasn't so bad but coming down was pure agony. I was very glad Christina was up and could help me get Mom from the bathroom doorway to the top of the stairs. I hope the home health aide whom the Visiting Nurse Service will send Wednesday will be able to assist me in giving her a bath. I was told by the visiting nurse we would get a home health aide two to three times per week for one-and-a-half hours a day. That really isn't long enough to do anything special, but I will be able to run a few errands or just go for a long walk.
I have got to get to bed now, or I am afraid I will not have the energy to deal with tomorrow. I always have the feeling I am not doing enough for Mom and unfortunately guilt is not a good motivator for caregiving.
Tomorrow is another day, diary. Good night!